G Tube questions

I

izemmom

New member
I said for SO long, "But her sister (no cf) has NEVER been above the 50th percentile!" "But she's the same size as the other kids at daycare!" "But we aren't overly large people!" (Ok, that last one was a stretch to begin with! LOL)_

Heather is right, it's hard to accept that you just can't compare your cf'er to non cfer's. A dietician (with whom I have a love/hate relationship) said very sternly to me, "Her sister doesn't have cf. Her sister doesn't need ten times the normal amount of calories just to maintain daily activity. Her sister doesn't need to constantly fight off illness." She was right.

There's another thread out there right now about g-tubes. Several of us have detailed our experiences there. In general, I'm SO glad that we did it.

It is a very difficult decision, absolutely the most heart-breaking one I'd had to make at that point. Just don't let fear get in the way. Good luck to you!
 
I

izemmom

New member
I said for SO long, "But her sister (no cf) has NEVER been above the 50th percentile!" "But she's the same size as the other kids at daycare!" "But we aren't overly large people!" (Ok, that last one was a stretch to begin with! LOL)_

Heather is right, it's hard to accept that you just can't compare your cf'er to non cfer's. A dietician (with whom I have a love/hate relationship) said very sternly to me, "Her sister doesn't have cf. Her sister doesn't need ten times the normal amount of calories just to maintain daily activity. Her sister doesn't need to constantly fight off illness." She was right.

There's another thread out there right now about g-tubes. Several of us have detailed our experiences there. In general, I'm SO glad that we did it.

It is a very difficult decision, absolutely the most heart-breaking one I'd had to make at that point. Just don't let fear get in the way. Good luck to you!
 
I

izemmom

New member
I said for SO long, "But her sister (no cf) has NEVER been above the 50th percentile!" "But she's the same size as the other kids at daycare!" "But we aren't overly large people!" (Ok, that last one was a stretch to begin with! LOL)_

Heather is right, it's hard to accept that you just can't compare your cf'er to non cfer's. A dietician (with whom I have a love/hate relationship) said very sternly to me, "Her sister doesn't have cf. Her sister doesn't need ten times the normal amount of calories just to maintain daily activity. Her sister doesn't need to constantly fight off illness." She was right.

There's another thread out there right now about g-tubes. Several of us have detailed our experiences there. In general, I'm SO glad that we did it.

It is a very difficult decision, absolutely the most heart-breaking one I'd had to make at that point. Just don't let fear get in the way. Good luck to you!
 
I

izemmom

New member
I said for SO long, "But her sister (no cf) has NEVER been above the 50th percentile!" "But she's the same size as the other kids at daycare!" "But we aren't overly large people!" (Ok, that last one was a stretch to begin with! LOL)_

Heather is right, it's hard to accept that you just can't compare your cf'er to non cfer's. A dietician (with whom I have a love/hate relationship) said very sternly to me, "Her sister doesn't have cf. Her sister doesn't need ten times the normal amount of calories just to maintain daily activity. Her sister doesn't need to constantly fight off illness." She was right.

There's another thread out there right now about g-tubes. Several of us have detailed our experiences there. In general, I'm SO glad that we did it.

It is a very difficult decision, absolutely the most heart-breaking one I'd had to make at that point. Just don't let fear get in the way. Good luck to you!
 
I

izemmom

New member
I said for SO long, "But her sister (no cf) has NEVER been above the 50th percentile!" "But she's the same size as the other kids at daycare!" "But we aren't overly large people!" (Ok, that last one was a stretch to begin with! LOL)_
<br />
<br />Heather is right, it's hard to accept that you just can't compare your cf'er to non cfer's. A dietician (with whom I have a love/hate relationship) said very sternly to me, "Her sister doesn't have cf. Her sister doesn't need ten times the normal amount of calories just to maintain daily activity. Her sister doesn't need to constantly fight off illness." She was right.
<br />
<br />There's another thread out there right now about g-tubes. Several of us have detailed our experiences there. In general, I'm SO glad that we did it.
<br />
<br />It is a very difficult decision, absolutely the most heart-breaking one I'd had to make at that point. Just don't let fear get in the way. Good luck to you!
 
N

NanaOf8GirlsAndCounting

Guest
We really didn't have a hard decision with Graycie getting the g-tube. After her birth she had surgeries and complications that required her to stay in the hospital for over 6 months(Seemed like forever) After staph infections, TPN and blood clots etc.. she was not gaining weight. Part of this was bottle aversion due to the fact that she did not feed for months. NG tube was used. So in order for us to take her home the G-tube was the answer. She is doing great with it and she is now 16 months old. She is in the 10% for her weight and only 3% for height so she is still on yellow. But she looks so nice and chubby. Almost all her meds go thur it because she has a low gag factor. She is very active and it doesn't bother her or us at all. We talked about getting rid of it but realize what a bad idea that would have been. Its part of her now and we would really miss it if it were gone.
 
N

NanaOf8GirlsAndCounting

Guest
We really didn't have a hard decision with Graycie getting the g-tube. After her birth she had surgeries and complications that required her to stay in the hospital for over 6 months(Seemed like forever) After staph infections, TPN and blood clots etc.. she was not gaining weight. Part of this was bottle aversion due to the fact that she did not feed for months. NG tube was used. So in order for us to take her home the G-tube was the answer. She is doing great with it and she is now 16 months old. She is in the 10% for her weight and only 3% for height so she is still on yellow. But she looks so nice and chubby. Almost all her meds go thur it because she has a low gag factor. She is very active and it doesn't bother her or us at all. We talked about getting rid of it but realize what a bad idea that would have been. Its part of her now and we would really miss it if it were gone.
 
N

NanaOf8GirlsAndCounting

Guest
We really didn't have a hard decision with Graycie getting the g-tube. After her birth she had surgeries and complications that required her to stay in the hospital for over 6 months(Seemed like forever) After staph infections, TPN and blood clots etc.. she was not gaining weight. Part of this was bottle aversion due to the fact that she did not feed for months. NG tube was used. So in order for us to take her home the G-tube was the answer. She is doing great with it and she is now 16 months old. She is in the 10% for her weight and only 3% for height so she is still on yellow. But she looks so nice and chubby. Almost all her meds go thur it because she has a low gag factor. She is very active and it doesn't bother her or us at all. We talked about getting rid of it but realize what a bad idea that would have been. Its part of her now and we would really miss it if it were gone.
 
N

NanaOf8GirlsAndCounting

Guest
We really didn't have a hard decision with Graycie getting the g-tube. After her birth she had surgeries and complications that required her to stay in the hospital for over 6 months(Seemed like forever) After staph infections, TPN and blood clots etc.. she was not gaining weight. Part of this was bottle aversion due to the fact that she did not feed for months. NG tube was used. So in order for us to take her home the G-tube was the answer. She is doing great with it and she is now 16 months old. She is in the 10% for her weight and only 3% for height so she is still on yellow. But she looks so nice and chubby. Almost all her meds go thur it because she has a low gag factor. She is very active and it doesn't bother her or us at all. We talked about getting rid of it but realize what a bad idea that would have been. Its part of her now and we would really miss it if it were gone.
 
N

NanaOf8GirlsAndCounting

Guest
We really didn't have a hard decision with Graycie getting the g-tube. After her birth she had surgeries and complications that required her to stay in the hospital for over 6 months(Seemed like forever) After staph infections, TPN and blood clots etc.. she was not gaining weight. Part of this was bottle aversion due to the fact that she did not feed for months. NG tube was used. So in order for us to take her home the G-tube was the answer. She is doing great with it and she is now 16 months old. She is in the 10% for her weight and only 3% for height so she is still on yellow. But she looks so nice and chubby. Almost all her meds go thur it because she has a low gag factor. She is very active and it doesn't bother her or us at all. We talked about getting rid of it but realize what a bad idea that would have been. Its part of her now and we would really miss it if it were gone.
 
A

ashmomo

New member
My personal experience with this...
From birth the doctors were concerned with our daughters weight...usually in the 5-15%. They were on us about a tube for some time and we just didn't think it was necessary or something we wanted to put her through. Also, we are not big people by any means! I am 5'2 and before kids only about 100 pounds...fiance is 5'11 and under 170. We just wanted her to be who she is unless it came to be a problem. She was very active and seemed to be quite healthy all the time. After 2 years of age they seemed to let down a bit.
She is now 4 years old and just making it to the 45% for BMI. I do have to say trying to get her to eat is stressful, but she seems to be gaining okay now and does drink her Boost daily. It is just the reg food that is a problem. As long as she drinks the Boost and is gaining weight, I try no to stress.
I guess it would be a big stress relief when it comes to getting them to eat, but I still would rather her be without unless it became obviously medically necessary. My opinion though, everyone has their own. Someday we may have to give in in the future, but for now I feel she is very healthy. (she has not had many problems with her CF to this point, though....no big infections to fight off or anything)
I hope you make the right decision for your baby. Good luck!
 
A

ashmomo

New member
My personal experience with this...
From birth the doctors were concerned with our daughters weight...usually in the 5-15%. They were on us about a tube for some time and we just didn't think it was necessary or something we wanted to put her through. Also, we are not big people by any means! I am 5'2 and before kids only about 100 pounds...fiance is 5'11 and under 170. We just wanted her to be who she is unless it came to be a problem. She was very active and seemed to be quite healthy all the time. After 2 years of age they seemed to let down a bit.
She is now 4 years old and just making it to the 45% for BMI. I do have to say trying to get her to eat is stressful, but she seems to be gaining okay now and does drink her Boost daily. It is just the reg food that is a problem. As long as she drinks the Boost and is gaining weight, I try no to stress.
I guess it would be a big stress relief when it comes to getting them to eat, but I still would rather her be without unless it became obviously medically necessary. My opinion though, everyone has their own. Someday we may have to give in in the future, but for now I feel she is very healthy. (she has not had many problems with her CF to this point, though....no big infections to fight off or anything)
I hope you make the right decision for your baby. Good luck!
 
A

ashmomo

New member
My personal experience with this...
From birth the doctors were concerned with our daughters weight...usually in the 5-15%. They were on us about a tube for some time and we just didn't think it was necessary or something we wanted to put her through. Also, we are not big people by any means! I am 5'2 and before kids only about 100 pounds...fiance is 5'11 and under 170. We just wanted her to be who she is unless it came to be a problem. She was very active and seemed to be quite healthy all the time. After 2 years of age they seemed to let down a bit.
She is now 4 years old and just making it to the 45% for BMI. I do have to say trying to get her to eat is stressful, but she seems to be gaining okay now and does drink her Boost daily. It is just the reg food that is a problem. As long as she drinks the Boost and is gaining weight, I try no to stress.
I guess it would be a big stress relief when it comes to getting them to eat, but I still would rather her be without unless it became obviously medically necessary. My opinion though, everyone has their own. Someday we may have to give in in the future, but for now I feel she is very healthy. (she has not had many problems with her CF to this point, though....no big infections to fight off or anything)
I hope you make the right decision for your baby. Good luck!
 
A

ashmomo

New member
My personal experience with this...
From birth the doctors were concerned with our daughters weight...usually in the 5-15%. They were on us about a tube for some time and we just didn't think it was necessary or something we wanted to put her through. Also, we are not big people by any means! I am 5'2 and before kids only about 100 pounds...fiance is 5'11 and under 170. We just wanted her to be who she is unless it came to be a problem. She was very active and seemed to be quite healthy all the time. After 2 years of age they seemed to let down a bit.
She is now 4 years old and just making it to the 45% for BMI. I do have to say trying to get her to eat is stressful, but she seems to be gaining okay now and does drink her Boost daily. It is just the reg food that is a problem. As long as she drinks the Boost and is gaining weight, I try no to stress.
I guess it would be a big stress relief when it comes to getting them to eat, but I still would rather her be without unless it became obviously medically necessary. My opinion though, everyone has their own. Someday we may have to give in in the future, but for now I feel she is very healthy. (she has not had many problems with her CF to this point, though....no big infections to fight off or anything)
I hope you make the right decision for your baby. Good luck!
 
A

ashmomo

New member
My personal experience with this...
<br />From birth the doctors were concerned with our daughters weight...usually in the 5-15%. They were on us about a tube for some time and we just didn't think it was necessary or something we wanted to put her through. Also, we are not big people by any means! I am 5'2 and before kids only about 100 pounds...fiance is 5'11 and under 170. We just wanted her to be who she is unless it came to be a problem. She was very active and seemed to be quite healthy all the time. After 2 years of age they seemed to let down a bit.
<br />She is now 4 years old and just making it to the 45% for BMI. I do have to say trying to get her to eat is stressful, but she seems to be gaining okay now and does drink her Boost daily. It is just the reg food that is a problem. As long as she drinks the Boost and is gaining weight, I try no to stress.
<br />I guess it would be a big stress relief when it comes to getting them to eat, but I still would rather her be without unless it became obviously medically necessary. My opinion though, everyone has their own. Someday we may have to give in in the future, but for now I feel she is very healthy. (she has not had many problems with her CF to this point, though....no big infections to fight off or anything)
<br />I hope you make the right decision for your baby. Good luck!
 
B

babyluke

New member
For Luke it became necessary when he was no longer making a steady climb on "his" growth curve. He had never been on the actual growth curve (until this month--in the 10th percentile whoo-hoo!!!!!!) Anyway, I think that can be a really good indicator that it is time to give the g tube some real consideration. Luke was really small. He was diagnosed at 3 months and was only 7 lbs. After he was put on enzymes he did begin to gain steadily. But then he platued (sp?). We gave it a couple more months, but by his next appt. he had even dropped further. Once he became active, it just got too hard to get the necessary calories in him. I think it is ok to take some time with this decision because it is a big one, but the feeding tube was not nearly as big of a deal as I had built it up in my mind to be and I have never regretted our decision to have it done.
 
B

babyluke

New member
For Luke it became necessary when he was no longer making a steady climb on "his" growth curve. He had never been on the actual growth curve (until this month--in the 10th percentile whoo-hoo!!!!!!) Anyway, I think that can be a really good indicator that it is time to give the g tube some real consideration. Luke was really small. He was diagnosed at 3 months and was only 7 lbs. After he was put on enzymes he did begin to gain steadily. But then he platued (sp?). We gave it a couple more months, but by his next appt. he had even dropped further. Once he became active, it just got too hard to get the necessary calories in him. I think it is ok to take some time with this decision because it is a big one, but the feeding tube was not nearly as big of a deal as I had built it up in my mind to be and I have never regretted our decision to have it done.
 
B

babyluke

New member
For Luke it became necessary when he was no longer making a steady climb on "his" growth curve. He had never been on the actual growth curve (until this month--in the 10th percentile whoo-hoo!!!!!!) Anyway, I think that can be a really good indicator that it is time to give the g tube some real consideration. Luke was really small. He was diagnosed at 3 months and was only 7 lbs. After he was put on enzymes he did begin to gain steadily. But then he platued (sp?). We gave it a couple more months, but by his next appt. he had even dropped further. Once he became active, it just got too hard to get the necessary calories in him. I think it is ok to take some time with this decision because it is a big one, but the feeding tube was not nearly as big of a deal as I had built it up in my mind to be and I have never regretted our decision to have it done.
 
B

babyluke

New member
For Luke it became necessary when he was no longer making a steady climb on "his" growth curve. He had never been on the actual growth curve (until this month--in the 10th percentile whoo-hoo!!!!!!) Anyway, I think that can be a really good indicator that it is time to give the g tube some real consideration. Luke was really small. He was diagnosed at 3 months and was only 7 lbs. After he was put on enzymes he did begin to gain steadily. But then he platued (sp?). We gave it a couple more months, but by his next appt. he had even dropped further. Once he became active, it just got too hard to get the necessary calories in him. I think it is ok to take some time with this decision because it is a big one, but the feeding tube was not nearly as big of a deal as I had built it up in my mind to be and I have never regretted our decision to have it done.
 
B

babyluke

New member
For Luke it became necessary when he was no longer making a steady climb on "his" growth curve. He had never been on the actual growth curve (until this month--in the 10th percentile whoo-hoo!!!!!!) Anyway, I think that can be a really good indicator that it is time to give the g tube some real consideration. Luke was really small. He was diagnosed at 3 months and was only 7 lbs. After he was put on enzymes he did begin to gain steadily. But then he platued (sp?). We gave it a couple more months, but by his next appt. he had even dropped further. Once he became active, it just got too hard to get the necessary calories in him. I think it is ok to take some time with this decision because it is a big one, but the feeding tube was not nearly as big of a deal as I had built it up in my mind to be and I have never regretted our decision to have it done.
 
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